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Goofy Caleb

Spunky Hannah

Baby Joshua

Our Rainbow Baby, Luke

Sunday, October 3, 2010

I had a horrible feeling yesterday that something was not right with Joshua. I bugged the doctor over and over. I asked the nurse constantly to check on him, listen to him, etc. They were very careful in listening to me and hearing my concerns. They did labs, chest x-rays, blood gases, and everything kept coming back normal. However, I knew something was wrong. I continued to push. The doctor finally said, he thought maybe Joshua was having some withdrawl. They gave him a dose of morphine which calmed him down enough to get the rest that he needed, but I was not convinced and felt like the drugs were just masking a bigger problem.

Finally at 10pm the cardiologist came in after doing a stat echo. He just wanted to peek in and see how he was doing. I told him flat out that I was seriously concerned that something wasn't right. He said he felt like it too, and that we would talk in the morning. I left here sobbing and paralyzed with fear that something terribly wrong was going to happen.

Boy, was I right. I got a call at 1am from the doctor. She told me that Joshua's O2 sats were in the low 60's often times dipping to high 50's. They put him on a nasal cannula with some oxygen and he was doing much better. I asked if I needed to come in and she said that I could if I wanted to, but that she felt like he was in fact stable. By that time I had a horrible headache and knew that it was not over yet and needed to get some sleep so I could function the next day. I got up, took some tylenol and tried to get some rest.

Then, at 7 am I received another call from the doctor. Joshua had crashed again, but not nearly as serious as he had the last time. They had him on CPAP and had given him some bolus doses of fluids. He was acidodic again and they weren't sure what was wrong. I got up, threw on some new clothes and got over to the hospital as quickly as I could. By the time I got here, they were working on trying to get an IV in him to give him a blood transfusion. After literally about 50 sticks, they finally were able to get a vein in his head.

As of right now, he is stable again. Resting comfortably. He is off CPAP, and just on a high flow nasal cannula on room air. His sats are hanging out in the mid 80's. The doctors determined that he was severely dehydrated. (before you attack the doctors, they monitor the in's and out's and it was all even. the labs showed that something-I can't remember what- was elevated, but they attributed that to the TPN that he is on. It's so hard to get these types of kiddos fluids regulated)

I am SO glad that I fought with the social worker this week. It totally reconfirms my needs to be close by. I'm also glad that I was persistant in making my fears known. The night nurse spent almost the whole night in his room watching over him because she knew I was concerned. The cardiologist trusted my instinct and was already thinking about a plan. The doctor and nurse acted quickly to get him the help he needed before it got any worse.

Never again will I question my instincts. I am Joshua's mother and I know him better than anyone else.

Tonight I'm thanking God for his provision once again. I'm thanking God for Joshua's will to literally fight the doctors and nurses and for his will to survive.

14 comments:

affirmation that a mother truly knows her baby better than any medical professional EVER could (and i'm studying to BE a medical professional!) keep pushing for lil joshie. he needs you in his corner! covering you all in prayers tonight that fluids are all regulated and set where they should be.

Good for you for trusting your instincts! I used to get "good patient/advocate" syndrome where I clammed up and didn't say anything..just smiled and nodded..listened..but didn't say much to doctors about my kids care (especially Nat of course) and boy am I glad I grew outta that.. now I'm annoying (whatever..LOL) and persistent with stuff when it comes to doctors. I am in awe of you, Jill. And I'm sure "Joshie" (love that) is too. So glad to hear that things are settling down.. praying that tonight is calm and that you can get some much-needed rest.

I'm so sorry for everything that you are going through. In my experience with a terminal diagnosis for my pregnancy at 20 weeks--I will always feel that I did not fight hard enough for my little girl. I encourage you to continue to seek out anyone who will listen when you know that Joshua is struggling with. Praying for your family!

You are Joshua's best - and sometimes only - advocate! Do not be afraid to speak up for him. We found that it's not what you say, but how you say it, that makes a difference. Asking questions and listening to explanations gets you further than demanding specific tests. However, if honey doesn't work, try a little vinegar! Praying for you to stay strong, rested, and guided by our Almighty Father in all that you do. Praying for Joshua to improve and not give you any more scares.

First of all, let me say that I am praying for you tonight...I found out about your story through a friend, and was immediately interested simply b/c of your little boys name - Joshua. My husband and I lost our little boy, Joshua, when he was 26 days old, b/c of a heart defect. Our/His story is long (and amazingly perfect, in God's eyes) but I won't share it here...I just wanted you to know that I am praying...and will be. I would love to share more, if there is ever a time you would want to hear it - but please don't feel any pressure to respond.It's so wonderful to know that God's plans truly are perfect, but here on earth there are days when our human bodies and minds don't find that very easy to hold on to. Praying...and sending a HUG tonight...~Angie

A mother always knows when her baby is in trouble, Jill. It's instinctive. I know your sweet Joshua has gone to the angels now and I am sorry for that. But, for the time he did have you at his side, he had the best care and most loving mother ever. I have been there. I lost my son to a CHD and lung malformation. I knew the moment I was losing him. I felt it. And, when his twin brother was about to succumb to the same fate, I beat down the door of every single doctor I could find til SOMEONE would listen to me that there was something wrong.

I was right and my son spent 3 months in NICU recovering from his emergency open heart surgery.

We just know, Jill. Mothers are about as close to God as a child can get...until he is actually with God himself.

My love and my prayers to you and yours.

PS: Please ignore the anonymous cowards that couldn't possibly fathom what you have gone through. People that cannot sign their name have no conviction and therefore, their opinions really don't matter. xoxo

Hey Anonymous, you need a good slap for kicking someone when they are down. Don't you have a name? You are as bad as the funeral protesters. She just lost her baby through no fault of her own and you have to give her more grief. It was a heart defect sometimes they are so precious that God knows that they are too perfect for this world and they belong with him. Leave her alone, if you ddon't have anything nice to say, don't say anything at all.

To Jill, I'm really sorry for your lost. I just read about you today and I sobbed at my desk. You are in my prayers.

Dear Jill and family- I send you my congrats on your huge and all encompacing faith in our wonderful God! He will see you all through this time of loss snd grieving and you have the comfort of His love-to have given you such a beautiful baby Joshua to love and care for-even for a short time-you now have many many wonderful but bittersweet memories-I am a frim believer God chooses us and He never gives us more than we can handle with His help. May God continue to keep you all in His presious arms. And my you find His peace and love to get you all through. You are an amaizing family and I will keep you in my prayers.